Lessons from ME/CFS: Finding Meaning in the Suffering

May 22, 2014

Andrew Gladman muses upon what lessons he has taken from two years of ME/CFS.

If you’re aware of my previous articles here at Phoenix Rising then it’s pretty clear that I don’t generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write about it.

Every now and then, however, I like to dip my toes in and test the waters per say at the other end of the spectrum.

Recently I’ve been musing upon what my illness has taught me about myself and the greater world we live in. I’m not a believer in the notion that ‘everything happens for a reason’, even though I can see the comfort such a notion gives.

That being said, while I don’t believe that everything follows a set course I do think that we can ourselves find meaning in the experiences we have.

It’s often said that we are nothing if not the sum of our experiences, and if nothing else I’ve certainly had a lot of unique experiences in the past two years!

Only now that I’ve recognised a definite improvement in both my physical health and emotional stability do I allow myself to reflect upon what has been undoubtedly the most turbulent, uncertain and likely worst years of my life to date.

I never let myself do this previously to avoid the unbearable sense of loss that I’m sure many people in a similar situation to myself have felt, not just of lost health and lost well-being but moreover the lost years and experiences.

Earlier on during my disease I threw myself wholeheartedly to the whim of my doctors. I needed any help they had to offer and, of course, I was referred to see a therapist for cognitive behavioral therapy. I’m very critical of this therapy now with regard to its effectiveness in ME/CFS, but at the time anything was better than nothing, so I attended a session.

Quite early on it was clear that this wasn’t going to help me all that much. My therapist was quite young but she seemed much more astute that most.

At the end of the session I was discharged. She discussed with me how my life had changed and clearly recognised that my problems were physical and that this therapy was not going to work for me.

I find it somewhat humorous to recall the stages I’ve gone through while being ill. In the moment, it’s unrecognisable but now looking back I recognise the clear stages of grief that I went through, something I had previously thought was reserved exclusively for the dying and grieving.

The initial denial of ill health, the anger over the problems you’re facing, the bargaining — promising to be a better person in exchange for a cure, and the depression that follows the weight of problems you now face, leading to the lost sense of caring both about yourself and the greater world around you.

Only in the last couple of months can I say that I’ve accepted my disease and the limitations it imposes upon me.

Unfortunately, acceptance is likely only possible once a degree of improvement has been reached. The trouble then lies in that improvement is often limited at best for those that suffer with ME/CFS, so it’s difficult to escape the weight of depression that such loss imposes.

It’s very important to note, however, that the depression comes as a result of the life-altering disease and not the other way around! I think the natural course of this ‘acceptance’ is the musings I now find myself making.

Lessons learnt

I asked myself then, “What have I learnt in the last two years since becoming ill?”

It’s very difficult in the moment to comprehend much of anything that happens around us. Indeed, only the luxury of hindsight can treat us to such things.

For instance, I know now that my initial notion of health care as a magical place that cures people of any ailment is far from the reality.

Doctors these days are very good at treating what they understand. A broken leg? No problem. Diabetes? Easy! Even cancer is on the losing side of a plethora of research that looks set to have the disease on the ropes in the coming years.

Why then is ME/CFS proving such an enigma? Why have I had to endure doctors telling me that I just need some sunlight, some vitamins and some therapy? I suspect that it comes down to the modern world, a democracy that demands answers, moreover certainly, to everything in life — even where there aren’t yet any.

Further to this, I’ve found a field that I know, health permitting, I wish to work in and do my best to help.

Before my illness I was something of a typical teenager with no real plan for future employment other than attending university. I know now that when I do return to university my aspiration is to get into ME/CFS research through a biomedical degree. A high aspiration for someone with ME/CFS but hopefully one I’ll be able to achieve!

Another lesson that I’ve had to learn the hard way from ME/CFS is that of not pushing yourself too far. Prior to my illness I was without doubt an overachiever, always pushing myself to do the best I could and striving single-mindedly towards goals.

While this all sounds like the ideal mentality, in truth I recognised even at the time that this took its toll on not only my social life but sometimes even my well-being — even at a time where I was in perfect health.

From ME/CFS and my experiences while learning pacing, I have learnt that sometimes doing just enough is okay, not everything needs 100% effort. These are hard lessons to learn, given that they are against your very personality. But I can say that I’m perhaps a happier person now than I had been even before ME/CFS.

It’s all too easy to lose hope when suffering from such a terribly misunderstood and life-altering condition. Many times in the past two years have I broken down at the thought of my life going forwards.

It’s only when something so life-altering happens that you realise how good you had everything before. To dwell on times gone, however, is never going to help your health and certainly not your emotions!

When something so terrible happens we have to try our best to at least take away something from it, a lesson that puts everything into perspective. A lesson learnt is not going to suddenly cure you of illness but it’s that little something that can keep your spirits up even in the darkest of times.

Feel free to share the lessons you have learnt from living with ME/CFS and any musings you find yourself experiencing.

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

Thanks, Andrew! It's always good to hear about this part of someone's story – thank you. As a young person (24) living with ME for ten years now, I can definitely identify the sense of loss! I also found it really encouraging that you're hoping to go into biomedical research. Keep up the great work.

Thanks, Andrew! It's always good to hear about this part of someone's story – thank you. As a young person (24) living with ME for ten years now, I can definitely identify the sense of loss! I also found it really encouraging that you're hoping to go into biomedical research. Keep up the great work.

I'm glad you liked the article. I think it's all too easy to write a 'doom and gloom' article but I wanted to try and take a different spin and while recognizing the problems I've faced, also discussing the things I've learnt is important. As i say I'm not close to 100% yet but now that I'm getting towards 60 and perhaps even 70% on my best days of my previous capacity, it's interesting to look back upon the past couple of years and reflect a little.

Great insight @Legendrew. I've been looking for a way to sum up my experience over the last 24 years and can relate to most of what you said. Fwiw, based on your writings that I've read, I'm sure you'll do well in college.

I just realized the other day that I allow myself to have a 1-5 minute pity party at some point everyday. Complete with tears, swear words, etc. I'm sure it's something a therapist told me to do 20 ? years ago but I never realized that I had incorporated it into my life. The idea is to throw the party and move on with living my life as best as I can.

Fwiw I was also taught to view any small accomplishment as positive. A healthy person would certainly think my life is a complete waste since I barely manage daily living.

I too learned that there aren't any magic pills for pwcs and resent the way cfs / me has been maligned by governments and some health professionals. Hopefully that will change. Actually, based on what I see, pwcs are receiving beneficial treatments and treated with respect from integrative or cam professionals and certain enlighted traditional doctors.

I often think about how much easier the last 24 years would've been if I'd been diagnosed with cancer or ms or even the celiac I am.
Any illness that was viewed with respect and hopefully a plan would've made my life 1000 times easier.

Hmmmmm, 26.5 years. What have I learned. The good, I'm still alive, I still have faith and a sense of humor. I have more will to live than I ever would have thought. I have much more compassion and am less judgemental… The walk a mile in my shoes experience has made me a better person
The bad, you never really stop grieving for the old you. Sometimes, usually one of those 3am, exhausting no sleeping nights, I shed tears for what I have lost, what I wanted to do, what I will never have the chance to do as long as this illness exists.
The indifferent, the majority of the medical professionals. I attended nursing school for a few years. At that time if we were waiting for an elevator and a Dr. came up we really were instructed to let him(usually him in those days) have the the elevator and wait for another.( i quit cause i hated working with sick people, if I knew then what I know now Lol!) Yeah, respect due only to the career held. Not anymore, now I know way to many are idiots who are too lazy to bother with any patient who actually makes them earn that fancy car and gimormous house.

Interesting you mention the idea that "everything happens for a reason", I, like you, don't really accept this and wrote a blog post on it here….

I have had ME for 16 years now, and have learned a certain amount about myself during this time, what I can and can't do, the kind of person that I am, things I would probably not have learned without illness. Still, the truth is that I have lost a lot more than I have gained, and wouldn't want to go too far down the road of seeing meaning in suffering. Many times suffering serves no useful purpose, it doesn't make you a better person, you are not rewarded for it later.

Interesting you mention the idea that "everything happens for a reason", I, like you, don't really accept this and wrote a blog post on it here….

I have had ME for 16 years now, and have learned a certain amount about myself during this time, what I can and can't do, the kind of person that I am, things I would probably not have learned without illness. Still, the truth is that I have lost a lot more than I have gained, and wouldn't want to go too far down the road of seeing meaning in suffering. Many times suffering serves no useful purpose, it doesn't make you a better person, you are not rewarded for it later.

Yes, in fact it was your blog post that I had in my mind when writing that particular part of my article – the idea of 'everything happens for a reason' is certainly a very intriguing argument indeed and I enjoyed mulling over your article and the questions it raises to the reader. In fact I did intend to link people to your article originally before deciding against adding any links whatsoever in the article

While I accept the things that I can take from my illness – I do not doubt that my life would be an awful lot easier had I never become sick. But, as I mention in my article, reflecting too heavily upon the 'what ifs' and 'if onlys' I found only to make me feel worse mentally about the whole situation, by adopting the mentality of having learnt from my experiences I feel that I've at least been able to find a degree of solace about the whole affair.

I think my mentality would better be described as "no, not everything happens for a reason but we can find our own reason in the experiences, both good and bad, that we have".

@TheChronicSituation , there is a trivial sense in which everything does happen for a reason, in that everything has a cause (or more usually a web of complex interacting causes). I think this is one of the things that people use to justify the notion of destiny.

We live in a world in which even the experts typically fail to predict the future. Some get it right of course, but this is an old astrologer's trick. If a thousand people were to predict big events in the next seven days, then surely one of them or more are likely to be at least vaguely right. In fact vagueness is a hallmark of this kind of thing.

Science, economics, and yes, even medicine, fall foul of magical thinking from time to time. Homeopathy, for example, has at its theoretical core the two basic principles of magic, the principle of similarity and the principle of contagion.

Psychobabble rests on the notions of some vague indefinable mind that directs the body. Despite claiming that they have moved on from mind-body dualism, very few actually have, they have just changed the label.

Economics is the religion of money. Its not science, but it uses maths. So much of economics is pseudoscience at best. Just ask about long term forecasts. Then find out how they did. Also ask about the big events, the big crashes. Most never saw them coming, even though sometimes it was strongly suggested in the data. Economics is religion for the most part.

Science is becoming as bad. Not sciences like particle physics, or even astronomy, but sciences like climatology. Climate is vastly unpredictable. We can see this with even short term weather forecasts. Yet too many line up firmly on one side or the other of climate change with a dogmatic fervor. Most scientists worthy of the name will not speak of certainty, but of risk. The risks are there, and need to be managed, but asking for certainty is as bad as asking an economist the exact price of a stock in exactly twenty years to this minute.

Claiming everything happens for a reason does serve a purpose though. It is one of those society-serving platitudes. Variations of it have been used to justify slavery and other atrocities. Its a convenient social fiction, that is twisted and turned by people to suit their own purposes.

Everything has cause. Reason implies it was intended though. It implies purpose. The universe has adapted function in living things, but not purpose. Yet we speak as though purpose exists. Indeed I think this is what mind is too. We speak as though mind exists, is an entity. If anything, mind (to me) is an outcome of dynamic interaction of the brain with itself and the environment. Its a dynamic process, not a thing at all. Its a convenient simplification of brain function.

People create simplified realities. We don't handle complexity well. So we simplify. If everything has a purpose, there, the big picture is now done. Reality is simpler! Has everyone heard the narrative of why we are all like turkeys? I hope to post a blog based on that narrative at some point. Its very relevant to why the science, medicine and politics of ME is so stuffed up.

Yes, I feel like I am a worse person since being sick. Impatient, irritable, feel selfish – always need to be quiet, so have to tell people I can't talk to them right now. I don't keep relationships going, I forget birthdays, can't go and stay with family for long and the gaps between visits are huge. My world has become mainly me and what is happening to me lol it's appalling.

I've learnt that I don't handle the rough times well. They scare the heck out of me. And I really missed out on the comfort of wealth and the help that would have been to me (of course my own fault for not having it).
I think humor has got me through and something in my spirit seems to push me through but I have been to the "I can't go on anymore, I can't do this anymore many times, ."

I feel quite roughly handled by life, but I have to keep going and looking for the sweet – it must be there somewhere. I probably do have a lot sweet in my life – but the rough shouts louder.

I just noticed something @alex3619. You spelt humour right. I forget this spelling program is made in America. I thought the spelling humor was odd to me :rolleyes::D Now that I think about it I have been doing color instead of colour as well.

@rosie26 , sometimes when I slip I let the spellchecker change it for me. It does not particularly bother me, as if I have the choice of concerning myself with which version of English I want the spelling from, or whether or not we have a cure, I am going to pick cure. In any case the old spelling is dying, as the texting and netbabble age are changing the language forever. Personally I do have a problem with some grammar though, it just bugs me, but that is my hangup. Then I go and use degraded grammar myself, particularly when very tired.

That was a very thoughtful summary of what all of us here have probably undergone. I waded through the mire of the medical system, and know only too well how doctors are schooled to treat disease, but not in truly treating the underlying cause of an illness.

I learned that doctors vary greatly in their knowledge and skill; which is why I try to learn as much as I can from different doctors, as well as fellow-sufferers. Some doctors go into the field for the wrong reasons. I have a relative who works in a hospital, and told me "when I was in medical training, I was so naive`; I thought it was all about the patient. It's not – it's about money."

I identify so much with the comments: I get grouchy, irritable, and miss every social event. My entire life revolves around myself: curing myself, struggling to just take care of the basics. My bed and I are very well-acquanted. I live the better part of my life in my small room. When I'm not researching, I watch every episode of Gunsmoke, The Big Valley, and MASH (read that humor is healing).

As a Christian, I have to believe that things happen for a reason. I have gotten furious with God; if I were God, I'd do things a lot different. I've told Him he doesn't know what he's doing. Then, after I rant and rave, I'm still sick, and still need to talk to God. I believe in euthanasia, and wrote a letter to the editor in support of it. My mother died a horrific death of cancer; it is an ugly way to depart from this world. My mother-in law was put in a nursing home because she lost her urinary function.

She hated it. She became very ill a few months back. I felt guilty for not visiting her in there, but was so sick myself. I dragged myself up there (don't drive much anymore) It was an upscale nursing home, but reeked of urine. I had to pull my shirt up to cover my nose. The hall was filled with dozens of lifeless old people in wheelchairs.

My mother-in-law was struggling for every breath. I asked the nurse if she was being medicated. It was like talking to a person without a brain. She smiled and said "no". I insisted that she be put on morphine to ease her suffering. She ignored "the elephant in the room" – a poor soul desperately in need of help (some people should not be in caregiver jobs; there should be a compassion-screening test before they're hired). She told me the morphine wouldn't be in until 8:00 that night. I incredulously asked her "You don't keep morphine on hand in this facility??"

That is so burned into my brain that I told my husband he'd better pour morphine down my throat before putting me in a facility like that. I told him I'd crawl out. He said "you couldn't. That place is like a jail…there are monitors that go off when you get out of bed." And what is it all about? The Almighty dollar. It's a business.

This illness has made me become more of – I guess you would term an "activist". I've written legislators (worthless bunch; probably not all though) and written letters to the editor. I can do that from my bed with my laptop.

ONE thing I can say with fair certainty: we are all here – now – for a reason (you don't have to agree with me) and maybe my part here is to draw others to God. I have seen some of my prayers spectacularly answered; other times not. And I have suffered. David's prayer in the Psalms was "It is good for me that I have been afflicted, that I may learn thy statutes". I've felt that I've suffered enough to learn God's statutes – but He's God, and somewhere, in the deepest recesses of my being – I know that He must know what He's doing.

Andrew – my prayers will be with you. I hope that you will recover and do what your heart tells you to do.

Wanted to add few more things: Scripture also states "MY PEOPLE ARE DYING FOR LACK OF KNOWLEDGE" (apologies to anyone not a believer, but feel it is relevant to our situation).

There is undeniably a "Lack of Knowledge" in the medical community about these disorders – as well as many others.

When my mother became ill with cancer (just one of the major stressors that preceded my descent into this illness) she and my father trusted doctors way too much. They pumped her full of poison *chemo" – she was a beautiful woman; lost her hair, got very sick from it. The nurse even made a major mistake and allowed the chemo to pour into her from the foley bag – putting her into a comatose state. She recovered from that mishap, but died shortly thereafter.

I spoke with a woman in a health food store, who told me "the doctors are going to wait until your mother's insurance policy is tapped out, and then they won't even get on the phone with you. Their pensions are tied up in this". IT HAPPENED EXACTLY AS SHE TOLD ME.

There are truly good doctors, who have their hearts in the right place; I've met some.

However, most doctors are not trained properly. I believe the best doctors may turn out to be someone like Andrew, who has walked the fiery path of this disorder, and to quote Dr. Teitelbaum "knows the holy hell of it".

Sorry for long post but have one last thing to say: I was bedridden for years (didn't keep track of how long and don't want to) My daughter came to visit me – she is truly an inspiration – a good soul. I was depressed and said I couldn't do anything from my bed.

She said words to me that were burned into my brain: "You can write".

I didn't listen then (actually I was much sicker too, before going to a fibro specialist) but I write now. I gave a sample of my writing (it was on a good day) and was hired to write. They discharged me because I couldn't produce; too sick. I had began in psychology where I did very well) but couldn't complete degree.

Tried to do online journalism courses, but couldn't keep up.

So for now, I'm writing letters to the editor about things I care and feel deeply about: that people should not be permitted to text &amp; drive, school bullying should be a criminal offense (always had a heart for kids &amp; animals) and about the high taxes being extracted from my husband's paycheck, while I could use that money to pay someone to help me. "This country's mantra is Robin Hood in reverse: Take from the poor to give to the rich."

Maybe this may strike a chord in one or more of you here. From your bed you can change the world! "The pen is mightier than the sword".

Maybe you can write and nag the heck out of legislators until they help us.

In my opinion the single greatest threat to humankind is ignorance … lack of knowledge. The second one could be called arrogance … the belief we understand, and fostered by a tendency for confirmation bias. Much of what we think we know is probably wrong, either as individuals or society or even modern civilization. Figuring out which bits are right and which bits are wrong is however not something we can easily do.

So the scripture appears right on this issue, I wont dispute that. Its a little piece of ancient wisdom.

People invent meaning, explanations and understanding. Much of the time we are wrong. Its a huge problem for everyone, and I do mean everyone. Intuitive understanding is high fallible, and this has been clearly demonstrated in research. Further, reason itself is highly fallible – you can improve reason, but you cannot escape its limitations. To err is human.

Intuitive understanding is however so right about most simple things that its the foundation of how we interact with the world, and a survival trait. Yet even experts in probability or statistics routinely fail to intuitively understand issues involving probability. When even experts get it wrong, what chance do we have?

Your last sentence was "mighty-well-told" – I asked my father &amp; husband "What do you do, when you turn to the LAST possible being who can help you, and you don't get an answer?" My pastor said "that is where your f*a*i*t*h comes in."

I agree that ignorance, as well as arrogance are great evils. I've been wrong before; I'll be wrong again; although some truths we have lived. I am open to rebuke; that is also Scriptural "Rebuke a fool, and he'll hate you, rebuke a wise man, and he'll be wiser still." Proverbs.

Corrie ten Boom lived through the horrors of being in a Nazi concentration camp. She said "our enemies are the unpaid guardians of our souls". (Not that you are an enemy – but others can often see our flaws better than we can).

I know some Truths because I lived through them. You don't know me, but those who do, know that I do not speak with a forked tongue. Take it for what you will. I find this hard to explain, but I will do my best: Through ignorance, when I was younger, my life was touched by real evil. I was raised Catholic, but was never well-taught about spiritual things. I learned, in one of the worst ways, that real evil does exist.

Because of that, I turned to God. He did not help me as I thought He should. I suffered a lot. I happened to bump into a neighbor one day at a store, who was also a Christian, who had "walked through the fire". She recommended a book called "The Adversary" by Mark Bubeck. It cleared away the fog of what I had experienced personally. (The "Adversary" is "Satan").

I don't share this too much, but I'm getting a little old for "Masks"

People who are not "spiritually regenerated" can't understand Scripture, and they think you're a nut or fanatic or whatever. When Christ was asked why He spoke in Parables, he said "to you has been given the ability to understand…" (not sure of exact wording &amp; don't know how to work this laptop well yet). To understand Scripture and spiritual truths, we must be given the "ability" to understand – by God. When I tried reading the bible – it was like gibberish to me. But "a little here, and a little there", I began to understand and comprehend. There is still much of the bible I do not comprehend yet.

Anyway, I have turned from God in anger – but I can never – ever – escape from what I know and have lived to be true.

Maybe at times I can misinterpret what God is doing – and I hope and pray that I will never be so arrogant or presumptuous to try to "speak for God" (hope I didn't do that) but somehow – deep in my own heart and soul – I believe that there is a reason for this conversation.

More ancient wisdom. I might not be a practicing Christian, but that doesn't mean I cannot appreciate a lot of its wisdom. Anyone who wants to search for truth or wisdom will learn from criticism, though sometimes be critical of criticism, and cannot be afraid to admit error.

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.